Two rays of light

by Jonathan RosenblumBaltimore Jewish Times
February 20, 2004

http://www.jewishmediaresources.com/682/two-rays-of-light

Last year, the New York Times ran a long piece describing the latest in American Jewish bar and bat mitzvahs, a subject long thought to be beyond parody -- "gyrating [non-Jewish] dance wonders" to serve as "party motivators." And this year, the Wall Street Journal reports that blow-out bar mitzvahs have made young Jews the envy of their upscale non-Jewish classmates, who are now pressuring their parents their own 13th birthday bashes, which can run up to $75,000, including the DJs and dancers.

One suspects that the Torah had something other than such conspicuous consumption in mind when we were singled out to be a "light to the nations."

The truth is that there are still plenty of Jewish kids who could fulfill that role. They just don’t happen to be the ones written up in the Times or WJS. Take six-year-old Naftali, who is currently undergoing chemotherapy in Jerusalem.

One day the non- religious hospital social worker approached Naftali’s bed and asked him whether he would like one of his chocolates used to bribe him to go to the hospital. "No," Naftali told her. "I plan to sell them." Surprised by Naftali’s entrepreneurial spirit, the social worker asked him what he intended to do with the proceeds. "I’m going to give the money to poor people," Naftali replied.

Later the same social worker asked Naftali whether he wanted to play with one of the many toys sent by well-wishers. Again, "No." This time Naftali explained, with the air used when speaking to the slightly dense, he intended to sell the toys, unplayed with, so he could give money to tzedakah. Naftali does not think of himself, despite sharing a smallish Jerusalem flat with a dozen or so siblings and suffering a life-threatening disease, to be a proper recipient of "tzedakah."

Mikey Butler, whose 24-year battle first with cystic fibrosis, and then, after a double-lung transplant, with lymphoma ended two weeks ago in Pittsburgh, was another beacon of light. Mikey’s doctor told his parents when he was still an infant that he had turned blue and had less than an hour to live. By the time he was twelve, he directed his own treatment on the many occasions when he was rushed to the hospital emergency room. Twice he went into septic shock during his rounds of chemotherapy; once all his vital signs flat-lined before he was brought back to life.

But what was ultimately most remarkable about Mikey was not his survival against all odds, but his attitude. As a young boy, Mikey told officials from the Make-A-Wish Foundation that he had everything he needed. (He eventually settled on celebrating his bar mitzvah in Israel.)

A college friend, Mordechai Luchins, summed it up best in an Email to Mikey’s parents, "Have you ever watched anyone die? I have . . . No, I never watched someone die. . . . I have, however, had the honor of watching someone live."

Mikey spent over half his life in hospital. Yet he graduated Yeshiva University, despite schlepping an oxygen tank from class to class, and having to return home for frequent hospital tune-ups lasting weeks. Mikey volunteered his summers at a camp for special needs children, at which one of his brothers was a camper. After his double-lung transplant, he still managed to be the lead drummer at the Western region convention of National Council of Synagogue Youth, a group for which he was a frequent inspirational speaker.

I once spent a Shabbos in Pittsburgh with the Butler family. Though have been visited with what seems to the outside observer a modern version of the sufferings of Job, one cannot imagine a happier, more upbeat family. They truly live according to the signature line from the Mikey Updates that his mother Nina sent out to thousands around the globe: Day by glorious day.

Never did the Butler’s doubt that there was purpose to Mikey’s life. They hoped that the experimental stem cell transplant therapy that Mikey underwent would succeed and become the standard therapy for overcoming.

Mikey’s story inspired thousands around the globe, the daughter of one of his doctors celebrated her eighteenth birthday by donating blood for the first time for Mikey. The list of most recent donors in Pittsburgh required four single-spaced pages, and it was said in Pittsburgh that the likeliest place to meet one’s friends was at the local blood bank.

"G-d is good," Mikey mouthed to his father two months ago, at a time when he could no longer see, hear, breathe unaided, walk, or talk. He lived with the attitude that even in the hospital he could find opportunities to do chesed for others. To the end, he was in Email contact with hundreds around the globe, often encouraging others undergoing medical crises. Two day before he passed away, Mikey wrote to a woman who had expressed fears of radiation treatment, "If you ever want to talk about it or have any questions, etc. . ., you know I am here."

Despite his suffering, Mikey’s life never centered around himself. On a family outing to a movie, he never told anyone that he could not hear the dialogue or see well enough to read lips because "it looked like everyone was enjoying themselves so much." He encouraged his parents to attend a cousin’s bat mitzvah in January, and when his younger brother Gavri became engaged two weeks before his passing, he sent out a mass Emailing to express his joy. He wrote of his brother: "I love him and respect him in ways I cannot and will not try to put into words. While I have been on a medical roller coaster, he has had to grow up very fast to fill in gaps no brother should have to."

Mikey never realized his ambition to live a single day as a normal person, without 50-70 doses of medicine. But he achieved something far greater – changing the lives of thousands who knew him or even knew of him.

Now if only Naftali and Mikey were the images of Jewish youth shown to the world.